Seeking advice for painful pyoderma gangrenosum around stoma

I have had some skin breakdown around my stoma lately. It is terribly painful and keeps getting worse. My ostomy nurse said today that it was pyoderma gangrenosum. She's got a treatment plan but said it could take a few months. Anyone else have any experience with this? It really hurts and is causing leaks all the time.

Hi Mggy.  Sorry you're going through this.  Lots of us had skin issues of some kind or another and what worked sometimes for one didn't work for another.  Most of us have the utmost respect for the ostomy nurses.  All my experiences were good.  With the skin problem however, I might get an opinion from a skin doctor.  Hopefully you could do this without offending your nurse.

Wish you well.

Respectfully,

Mike

Hi Mggy34,

I had to look that one up! YIKES! Can't say I've ever had that or know anyone who has, but I feel for ya girl. Mike, I don't know if an ostomy nurse could handle this one, it's pretty intense. Here's a link to the Treatment section from Mayo. Not a lot of info that you probably don't already know, but at least the rest of us can get up to speed on your rather rare condition. I hope someone on here has some info/advice that can help you.

https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/diagnosis-treatment/drc-20350392

Regards,

Bob

Hi and welcome. The thread and what you're looking for has been discussed in another forum here... I forget where I saw it but it had some really good advice. I think if you search topics you may find it. There are several that contributed to this. It is very serious as you're aware. I think a nurse won't be much help. Skin doctor would do it. I wish I knew how to find that other thread. Don't worry someone will reply with this same exact thing and advise. Good luck. - Warrior

I did read some of the previous posts....they were kinda old so I guess I was hoping for a more recent experience! Thank you so much for the reply! The more I google it....the worse it gets!!! 

Warrior,

I did a quick search and came up with these. Are any of these what you're talking about? If the links won't load the topic titles are "Wound beside Stoma?" and "I Really Need Help with Ileostomy".

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=374

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=239

Later,

Bob

Thank you! The more I read, the more terrified I become! But it's rare and painful, so that's pretty much par for the course for me! My stoma nurse assured me we'll fix it, but a second opinion may not be a bad idea.  

Hello Mggy34. Thankyou so much for sharing your situation with us, and thank you to everyone who has replied with useful information and links. I have not heard of this before, so it is a useful educational experience for me.

My thoughts got with you and I hope to hear how you get on with treatment. 

Best wishes

Bill

Hi, Mggy34. I have looked at this online and I am sorry you are having these problems. This was the first I had heard of this. I think I would consult a doctor instead of an ostomy nurse, but you do what you think is best for you. I wish you the best and please keep us updated as it may help someone in the future.

Morning Bob. I checked those links you posted. No, they weren't what I had seen. Maggi did say she saw some posts on pg...but they were old. Old is good. Ha ha. But she's on the right track.

Hi Mggy34,

  Yeah, sometimes reading about things on the old Internet can scare the crap out of you (no pun intended).  Sometimes I wish I could go back and un-see some of what I've found on here. But in some sense I guess it's good to know how bad things can get and there's some comfort in knowing you're not THAT bad.  Unless of course you are THAT bad (or worse), and then that REALLY sucks.  Don't think you're alone in regards to "rare and painful", I think many of us on here have had more than our fair share of that, and many expect more of it in the future.  So we're all right there with ya, and remember that whatever doesn't kill ya just makes ya stronger.  Until of course, it kills you. At which point it doesn't really matter anymore.  So welcome to the Few, the Brave, the Strong...........the MARINE......no......not the MARINES..........the OSTOMATES!  Booo-Raaah sister!

Regards,

Bob 

Hi all, I think I saw an article about this on the uoaa.org site. Sometimes they have what I can't find here on this site.

Just an update in case anyone else ever gets this...my surgeon prescribed steroids. I just crush a prednisone tablet, put it directly on the bad spots, cover it with a wound dressing, and put on my appliance. The pain was gone within two days....it was amazing. Almost healed up!!!

This is good to know. Thank you for sharing. Wow, Pred tablets crushed? So simple.. Wasn't there a steroid cream available? I guess cream would not allow adhesion.. Hmm. Geez, crushing tablets. Simple fix. Glad it worked for you. Must be incredibly relieved. Thanks again for following up with us... Warrior

Hey Mggy, Thank you so much for sharing your experience.  So glad you asked the right person and got what you needed.  Hopefully your ostomy nurse will consider your effort educational and she or he will advise consultation in a similar situation.

Appreciate the great news,

Mike

Hey Maggie... It's been a long time since we heard from you. I recently got PG but not at the stoma site.. Nope. Someplace else. I'd like to know how you made out using the crushed steroid tablets.

Yeah, I had to take oral tablets of prednisone to clear mine up. Let's hear from you kiddo.------ Warrior

Hi guys,

Funny thing, as I said before, I had never heard of this Pyoderma Gangrenosum before you mentioned it. But a few weeks ago I met with my gastro and I showed her a small spot on the skin around my stoma that had gotten pink, sore, and was releasing a very small amount of pus under my barrier ring. Looked like a classic infection to me.....but she wanted me to talk to the Georgetown Derm team via teleconference. I set up the meeting for the following week, and then because I didn't want to let it get worse while waiting for the meeting.....I put myself on Amoxicillin and saw my primary care doc to get a swab test of the pus. The swab results were inconclusive (the story of my life), but by the time I met with Derm online the infection was completely gone. Before my virtual appointment with Derm, I sent them pics of my infection taken in 2-day intervals showing them how it cleared up. Despite it being all cleared up they still thought I might have Pyoderma Gangrenosum, despite me having zero indications of any active Crohn's disease. I'm actually healthier than most of them.......but they still wanted to proceed with a steroid treatment regime. Sooooo....I've been on Cyclosporine for the past week, had blood work done before I started and again yesterday, and have another week of Cyclo and one more round of bloodwork to go. My bloodwork before I started the Cyclo showed nothing......no elevated WBC....or any indication of infection. So I don't know how they'll declare success.......but I'm sure they will. You gotta love our medical system! UUGH!

Regards,

Bob

It just doesn't make sense they would put you through all that with no sign of anything. I guess it is better to be safe than sorry. Hope all stays cleared up. Best wishes and stay safe.

Hi Lovely,

Yeah, I think modern physicians are under a lot of pressure by patients to "provide" something each time someone complains of an ailment. It's come down to the mentality of "I had to take off from work, travel to your office....and then wait to be seen......you better give me SOMETHING for all my trouble"! They all want the instant solution that requires no effort on their part. It's sad. I've heard from some older friends of mine that years ago people were leery of prescription drugs and didn't want to be given pills to take for anything that bothered them.....so it seems we've done a 180 today. I'm constantly trying to reduce my supplements and meds, although I'm not on many. I want to get to a point where my body can sustain itself with what food I put into it, and not have to rely on a countertop full of prescription bottles and supplemental nutrition. An older, now dead, mentor of mine once told me that the human body is an incredible machine. It can pretty much take care of itself, but sometimes it may need just a bit of help. I think that might have been right, before we poisoned the air we breathe and the food we eat. Sort of makes sense too. But I've got friends my age who (I've seen it with my own eyes) just sit there listening to the doctor explain their condition while anxiously waiting to hear what new pharmaceutical they're about to be put on. I guess folks just don't understand the nature of drugs in general, or how they work........or they really wouldn't want any part of any of it. But it seems all the drug ads that run constantly on TV and the web had done their intended job and got us all believing there's a magic pill out there for everything........and we just need to remind our doctors to provide it to us. Reminds me of the lemmings heading towards the cliffs.

Regards,

Bob

Bob, you are right. The body is incredible. Look how it heals itself after surgery or heals after you have a cut. And people don't want to leave the doctor's office without some medicine. Sometimes when you read all the side effects of some of the medicines, it is kinda scary. We cause a lot of the problems ourselves. When we are younger, we think we can do a lot of things we shouldn't do. Like not eating right, smoking, pulling, or lifting heavy things. We can look back and say we should have taken better care of our bodies. I hope everything continues to go well for you. Best wishes and stay safe.